Landon Heise’s newborn blood test came back abnormal about a week after his birth.

His pediatrician immediately ordered a series of new tests, and at 12 weeks, Landon was diagnosed with a rare form of metabolic disorder that prevents his body from converting certain fats to energy. He was put on medication and a strict diet, averting permanent damage or even death.

Landon, a healthy boy with ginger hair and piercing blue eyes, turns 5 next month. Despite his disorder, he is plenty energetic. He wants to become Batman when he grows up — preferably at 17, after he gets his driver’s license for the Batmobile.

Because Landon had a false negative in a later test, the result from his blood screening administered as a newborn was the first and only sign in his first two weeks of life that something was wrong. Any delays in detecting his disorder could have damaged his brain and organs — or killed him.

“We would’ve had no idea,” said Regan Goodman, Landon’s mother. “We’re lucky it came back abnormal.”

Yet not all babies born in Arizona get swift results from newborn screenings like Landon did. Nearly a quarter of all newborn blood samples taken in Arizona over the past five years sat untested at the hospital for five or more days — about the time it took Landon’s family to receive the first indication of his genetic disease, known as very long-chain acyl-CoA dehydrogenase.

Some Arizona hospitals have among the highest rates of delays in the U.S.

Within 24 to 48 hours of birth, babies are pricked on their heels for a blood sample. Hospitals are required by Arizona administrative code to submit each baby’s blood sample within 24 hours or the next working day after the sample is collected. The effectiveness relies on how quickly the sample is tested. Although the diseases tested for are rare, they can be severe, even deadly, if not diagnosed quickly.

The state pays for FedEx courier service for hospitals tosubmit samples to the lab. State health officials consider it acceptable for lab samples to take up to four days to deliver.

But because the state has not strictly enforced delivery deadlines, hospitals across the state for years have taken up to 14 days to mail newborn blood samples to the state lab. In rare cases — less than 1 percent — samples arrived at the lab more than 15 days later, beyond the legal time limit in which the lab can analyze the samples.

Some Arizona hospitals in 2012 were among the worst across the nation in delays of samples arriving at the state lab, according to an analysis published last month by the Milwaukee Journal Sentinel.

A subsequent Arizona Republic analysis of data for the past five years found that at least 33 percent of blood samples collected at 17 of 42 Arizona hospitals took five days or longer to arrive at the state lab.

All hospitals that offer perinatal services are required to have their own policies and procedures on how and when samples are sent and how to follow up on results. Hospitals also are required to comply with all local, city and state rules and laws, including the state requirement to send newborn blood samples to the lab within 24 hours.

State health officials concede that the rule has been virtually unenforceable.

“I’ve always known that it (state administrative code) didn’t have much teeth,” said Will Humble, director of the Arizona Department of Health Services. “What I didn’t know is, I hadn’t seen these numbers recently for how many hospitals were missing the mark, especially getting over that three-day (mark).”

Hospital delays

The state’s Office of Newborn Screening has been aware of delays at hospitals since at least 2008. It has one health educator on staff who offers training and walk-throughs at hospitals that have slow turnaround times.

Ward Jacox, chief of the Office of Newborn Screening, said he has noticed two key issues when samples are delayed from the hospitals: Hospitals are not aware of the state’s courier service and send samples by regular mail, and they “batch” samples, meaning they wait until enough samples are available to send in one large shipment and save money rather than sending individual samples as collected.

There often also is a disconnect among hospital staffers. Nurses are pricking babies immediately after birth, but samples are handled byseveral staff memberswhomay not be aware how long it takes to mail samples out, Humble said.

The number of samples that took five or more days to arrive at the state lab has consistently decreased from 2008 to 2013. But several hospitals have a bad track record of delays over the past five years. The Little Colorado Medical Center in Winslow had the highest percentage of delayed samples, at 61 percent, since 2008.

Maryvale Hospital and West Valley Hospital, both under the Abrazo Health Care system, had the second- and third-worst rates over five years, respectively.

In 2012, Maryvale Hospital and Little Colorado Medical Center had the two worst rates of delays among all Arizona hospitals. Both have a low number of births each year, compared with larger hospital systems, especially in the Valley.

Gene Maronde, clinical laboratory director at Little Colorado Medical Center, said the hospital was unaware of its delays until contacted by The Republic. Hospital staffers were batching samples and mailing them out once a week, especially given the infrequency of births there, Maronde said.

When asked why the hospital was sending samples in batches, the medical center’s chief executive, Jeff Hamblen, said: “Because the FedEx stuff was costing money, and we didn’t want to send one damn card when we got it.”

Both Maronde and Hamblen said that they were not aware of the state’s courier service and that the hospital would start sending blood samples daily.

Maryvale Hospital Chief Executive Crystal Hamilton gave a written statement to The Republic in response to a request for interviews with officials there. It said: “Approximately five months ago, Maryvale Hospital became aware of an issue with the timeliness of submissions to the state. Upon learning this, we took immediate corrective action and now submit specimens to the Arizona State Lab on a daily basis.”

Requests for follow-up questions were denied.

Maricopa Medical Center at 24th and Roosevelt streets in Phoenix is among the hospitals that consistently had low delay rates.

Each baby born at Maricopa Medical Center has an order for a newborn screening so that nurses can do the test as soon as the baby arrives. Staff members are designated to track samples to make sure they’re being sent out on time, said Dr. David Brodkin, the center’s pediatric hospitalist and medical director of newborn nursery.

State makes fixes

Humble, the state health director, has set a goal: By July 1, he wants 95 percent of newborn-screening samples to arrive at the state lab within three days.

ADHS and the Arizona Hospital and Healthcare Association plan to hold education and training sessions for hospitals regarding requirements of the newborn-screening program and to remind them of the daily overnight shipping service that is included in the hospitals’ newborn-screening fees.

Cara Christ, assistant director of licensing services for ADHS, has notified Arizona hospitals that those that do not follow requirements for timely sample submissions may be subject to a complaint investigation by state health-licensing surveyors.

The Milwaukee Journal Sentinel found that state labs in 27 states do not process newborn-screening samples on weekends — many because they’re closed all weekend — potentially creating critical issues for rare but life-threatening diseases in infants.

Arizona does not operate its state lab on weekends, and the FedEx service runs only on weekdays. ADHS is running a pilot program for a Saturday pickup service for newborn-screening samples and asking some lab staff to work Saturdays on three-day weekends to test newborn-screening samples.

Humble said he does not believe that a two-day weekend delay at the lab is critical to screening samples, but he is concerned that three-day holiday-weekend delays may pose problems.

Opening the state lab seven days a week would require a 15 to 20 percent fee increase for hospitals, he said, and the costs would need to be weighed against potential dangers of weekend delays.

“At this point, I’m comfortable that we’re very unlikely to have bad outcomes because of a two-day weekend,” Humble said.

Lauren Houk was born full term, a healthy girl of 8 pounds, 4 ounces, in 1988. She learned to walk at 6 months and was a normal baby.

When Lauren was 19 months old, she and her older sister both caught the stomach flu and were vomiting. Their parents got them to sleep, but the next morning, Lauren’s father found her body limp, lifeless and blue.

Through a series of tests and coincidental events, Lauren’s family later found out the child who died had medium-chain acyl-CoA dehydrogenase, or MCAD, a disorder that now is included in the newborn-screening panel. It wasn’t included in 1988.

MCAD is a metabolic disease, as is very long-chain acyl-CoA dehydrogenase, or VLCADD, the fatty-acid oxidation disorder that Landon Heise is battling.

When the Houks’ third child, Austin, was born a few years later, his parents sent his blood sample out of state to be screened for MCAD. Like Lauren, he tested positive. The Houks took immediate action, and Austin learned how to cope with the disease. Next weekend, he graduates from the University of Arizona.

Debbie Houk, the children’s mother, now serves on the state’s Newborn Screening Advisory Committee, which worked to expand the state’s screening panel from eight disorders to 28 disorders, plus a hearing test.

“Although these are rare disorders, if it’s your child, it’s suddenly not so rare,” Houk said.

ADHS now is working to add two more disorders to the newborn-screening panel: critical congenital heart defects and severe combined immune deficiencies, which is common among certain Native populations.

“Newborn screening is one of the major positive public-health efforts in the last 10, 20 years. It’s just been lifesaving and brain-saving for many, many children,” said Dr. Kirk Aleck, chief of genetics at Phoenix Children’s Hospital. “The problem is the logistics of getting the specimen to the laboratory. ... Sometimes, it just doesn’t happen right, and it should happen right.”

Posting a comment to our website allows you to join in on the conversation. Share your story and unique perspective with members of the azcentral.com community.

Comments posted via facebook:

► Join the Discussion

Join the conversation! To comment on azcentral.com, you must be logged into an active personal account on Facebook. You are responsible for your comments and abuse of this privilege will not be tolerated. We reserve the right, without warning or notification, to remove comments and block users judged to violate our Terms of Service and Rules of Engagement. Facebook comments FAQ

Join thousands of azcentral.com fans on Facebook and get the day's most popular and talked-about Valley news, sports, entertainment and more - right in your newsfeed. You'll see what others are saying about the hot topics of the day.